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LIVING SECTION
WOMAN NEWS
Courage in the face of lupus
CHERYL CORNACCHIA
Gazette Woman News Reporter
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Despite the decline in her health over the past six months, Forestgreen was beaming as she showed off her new home, a gift from her elderly parents, and gave a demonstration of her new hydraulic lift chair, a gift from an Internet friend who lives in Arizona. “Physically, the past while has been awful,” says Forestgreeen. “But for every ounce of pain, there’s been something wonderful.” Forestgreen 40, has SLE – systemic lupus erythematosus – the most common and serious form of lupus, a chronic auto-immune disease that can affect any organ in the body and in a pattern that varies greatly from person to person. 
A single mother of two daughters, Forestgreen was diagnosed in March 1994. Last spring, she was featured in The Gazette Woman News section when she launched a lupus home-page. She is now housebound and her medical condition continues to worsen. Her daily regimen includes more than two dozen pills, among them steroids, anti-depressants and morphine. 
She is plagued with pleurisy, infections of her heart’s lining, osteoporosis, fatigue and arthritis – all lupus-related. Today she is not only in a wheelchair but wearing braces on her neck, arms, legs and back so that her ravaged body doesn’t fall on itself and break more bones. Last fall, she broke bones in her back. 
Lupus, a chronic disease, strikes primarily women in their childbearing years. Kidney failure, arthritis, heart failure, osteoporosis, pleurisy and skin lesions are among the ways the disease attacks the body. The problem stems from an immune system that cannot tell the difference between the person’s own tissue and foreign tissue, and afflicts nine times as many women as men.  (to be continued on page c5) 
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Killer with a low profile 

Statistics suggest that lupus, which can be life-threatening, affects anywhere from one in 185 (according to the Lupus Foundation of America) to one in 1,000 or one in 10,000, depending on which study you cite. What is undisputed, however, is that research into this primarily female disease is chronically underfunded. In the U.S., lupus has been labelled “an orphan disease,” a special category created to denote low-profile diseases in need of more research and better remedies. Under this special category the U.S. government gives out financial incentives. 
Here in Canada, Jean-Luc Senécal, an internationally renowned rheumatologist and director of the Lupus Clinic at Hôpital Nôtre-Dame has raised the question: “Lupus research in Canada. A vanishing species?” “There are no big names behind lupus,” said Ann Clarke,  co-director, with rheumatologist Paul Fortin, of the Montreal General Hospital’s lupus clinic. 
At one point synchronized swimmer Carolyn Waldo was a spokesperson for Lupus Québec, Clarke said, but added that compared to AIDS or breast cancer, “there hasn’t been a vocal group of activists for lupus funding. “We’ve received maybe $5,000 in private donations since the General opened this clinic,” she said. Lupus, she complained, is not a high priority with the newly created Canadian Arthritis Network, a federally-funded group of top Canadian rheumatologists who will receive $4 million a year for research for the next seven years . Still, Montreal’s two lupus clinics – one at the General and the other at Hôpital Nôtre-Dame – are forging ahead with basic science research, mainly funded by the Canadian Arthritis Society, that could improve treatments and demonstrate a need for more research. 
The Montreal General clinic follows 350 lupus patients, some as often as weekly and others once or  twice a year. On any given Wednesday, the clinic’s multi-disciplinary staff sees between 20 and 30 patients. There are women as young as 16 who have suffered lupus-related strokes and paralysis, others who have suffered kidney failure and need dialysis and still others with skin lesions. The only constant is the variety of ways in which lupus strikes these women. Many of these clinic patients, including Forestgreeen, are participating in research studies and clinical trials of new drugs, including one testing new biologics (LJP394 and anti-CD40ligand) that could prevent renal failure. 
Another study, recognizing the link between stress and well-being, is looking at the value of psychotherapy in the treatment of lupus and there’s a tri-nation  study comparing the medical/disease experience of 708 lupus patients in Canada, the U.S. and the U.K. 
“These are only first steps but someone had to start,” said Clarke, an allergist and clinical immunologist. For instance, the tri-nation study has found American patients undergo more diagnostic tests, Canadian and U.S. patients see more specialists and patients in the U.K. turn to generalists. About 50 per cent of patients in all three countries reported use of alternative medicine. The data has yet to be analyzed, but could give clues about how lupus treatment varies from country to country and how the treatment affects 
patients’ well-being. 
“We’re hoping some of our findings will lead to more money for 
research,” added Clarke. She said one particularly promising study, involving six centres, including the Montreal General, is tabulating the indirect costs associated with lupus. “If we only look at the time lost from paid work, the costs related to lupus don’t seem very high,” said Clarke, the principal investigator. 
In this study, the first-ever of its kind, she said  researchers are 
trying to quantify the real costs of a  protopyical women’s disease. 
When a man suffers cardiovascular disease, for example, the cost of that disease appears much higher than that of  lupus, because men earn so much more than women in the workplace and women’s unpaid ontributions are not taken into account, Clarke said. When non-labour market activity (childcare, house-cleaning, cooking, etc.) is added to the medical costs stemming from the disease and allowances are made for the diminished value of women’s paid work, the picture changes substantially. At a meeting of the College of American Rheumatologists in San Diego in November, Clarke reported early data from the study suggesting the 
indirect costs of lupus are greater than previously reported: $1,500 to $22,000 a year. “The lost household time has to be considered,” said Clarke, “or else it doesn’t look like a serious illness.” 
No one has to tell Forestgreen lupus is a serious illness or 
that it has unrelated costs that are dear. The Dorval woman is on 
welfare, relies heavily on her retired parents and uses a food bank run by a local church. But today she wants to concentrate on basking in the pleasure of her new home, a cosy two-bedroom bungalow tailor-made for her. It has leveraged door handles, wide doorways and floor-to-ceiling windows. “My parents have said there will be nothing left when they’re gone. (But) I can watch the birds in the trees from my wheelchair now,” she said. “It has given us all a new lease on life.” Her daughters Cindy, 20, and Melanie, 12, planted tulips in the garden and put up Christmas lights before they even moved in. Forestgreen still maintains her home-page (http://www.forestgreen.net) and relies on a large group of cyberspace friends, who often cross over into her real life. One Internet friend recently visited from P.E.I. and Forestgreen is still reeling from the generous gift of the hydraulic chair from an Internet friend she has never met in person. Since she launched her page last March she has received more than 4,000 visitors to her lupus site and although some days she is confined to her 
bed and can’t use her own computer, she is still full of praise for the Internet.“The more people we have in our lives the better,” she said. “It’s all about love and hope.” 

Index /Forestgreen Living With Lupus//Montreal Gazette Story 1998/Montreal Gazette Story 1999 /My Miracles/My Photo Journey - My Many Faces of Lupus/My Strength - My Family/ Comfort and Hope/Lupus Support and Other Health Links